(Written and published 4 years ago, this article is the perfect reminder of why we refer to September as Childhood Cancer ACTION month)

a·ware·ness
noun

1. knowledge or perception of a situation or fact.
“we need to raise public awareness of the issue”
2. synonyms: consciousness, recognition, realization

September is Childhood Cancer Awareness Month, and as I sat eating dinner with my family the other night, I told my husband, Stuart, that I should write something for this month of awareness. I blurted out, “Awareness. What a bullsh*t word. That word is the problem.” And just like that, this blog post was born.

I’m sure the word “awareness” comes from back in the day, when no one spoke of cancer. The “C” word, as it was called. People died quietly. Very rarely was a child with cancer even seen. Probably because there were no real treatments for them, so they died so quickly. Even 20 years ago, they were barely saving one child who was diagnosed with neuroblastoma, we were told at our consultation with Memorial Sloan Kettering Cancer Center. Hell, we were told that our daughter, Isabella, wouldn’t have survived her brain relapse if it had occurred just three years earlier. Isabella would have been dead 9 months after her initial diagnosis. There wouldn’t even have been enough time for me to get her story out to you. So, awareness month was a good thing back then… hey, meet this little 3-year-old with cancer… Nope, wait.. She’s already gone.

But now, times are changing. These kids are fighting harder and longer. Their stories are getting out there because the chemo drugs are not curing kids, but they are extending their lives. People ARE aware of them. Awareness of pediatric cancer is out there. But now we are getting stalled because the movement is not moving.

Here is what a typical pediatric cancer month looks like: You “like” a couple of Facebook posts about childhood cancer or maybe even “share” one. You think about signing up for a childhood cancer 5k, but your life is busy, so you don’t get around to it. You take your kids to soccer practice and do homework and have drinks with girlfriends and go to work and church and read People magazine to catch up on your favorite celebrities and see how short Lindsay Lohan’s shorts were in NYC the other day… “Oh, no she didn’t,” you say. And then, you are running errands in late September and start noticing the city turning pink and think, I need to schedule that mammogram.

Then it is October 1.

Did you know that the 2012 cost of government elections was more than 6.2 billion dollars? Did you know that in 2012, the cost to RE-ELECT the SAME president was estimated to be 2.6 billion dollars? That is something you should be aware of. Because in 2012, we spent less that 10 percent of that 2 billion dollars funding childhood cancer research, or less that 5 percentof the 6 billion-dollar-cost of 2012 government elections. And just 4 percent of the total cancer funding goes to pediatric cancer. Also scary to think about, 60 percent of all funding for drug development for adult cancers comes from pharmaceutical companies. What is the percentage of funding for drug development from pharmaceutical companies for childhood cancer research? Almost zero. Why? Because children’s cancer drugs aren’t profitable. Ouch.

There is some awareness for ya!

So, back to my issue with this “awareness” word. The movement I want to start is this… Let’s maybe change what your September looks like. Print a picture of my daughter. Tape it to the back of the doors in your house. That’s right, the front door and the back door. Every time you walk out the door, take a look at her.

She died in my bed on a Thursday morning around 9:30 while her little brother was at camp at the YMCA. She was 7 years old. She died about 80 years early. She also died because she ran out of treatment options. She died because her cancer has very little funding and her drugs aren’t profitable.

Look at her picture when you walk out the door for your awareness. “Awareness.” Check. But then, when you get in your car to take the kids to school, go to work, go to the gym… think about something you can do that is ACTION. Forget awareness. September is Childhood Cancer “ACTION” Month. Do something that day that is action to save a child’s life. Sign up for race, make a donation, research what is really going on, ask your friends to help, talk about it, have a lemonade stand, write your congressmen, help a family who has a child with cancer. Can’t think of something to do for 30 days? Email me, I’ll help you with your list.

Cancer is an epidemic in this country and I’m confused as to why people aren’t freaking out more than they are. Probably because they don’t have it… yet. Or maybe because we are all so “aware” of cancer, but aren’t taking action against it. Maybe we are all waiting for the future of cancer. In the new Matt Damon movie, Elysium, set in an imagined future, a quick scan on your body just “SNAP,” gets rid of it. The truth is, that is not even a remote possibility in your lifetime.

Every day I’m aware. I’m aware that she’s no longer with me. I’m aware that my 3-year-old daughter, Sophia, is inside coloring a picture for her right now. I’m aware that Isabella should be in the third grade this year. I’m aware that my husband lives in fear that he will never be able to love his children as much as he loved her. I’m aware that my 6-year-old, Grant, has nightmares about her. I’m aware that every day for the rest of my life I’m going to feel like there is something missing. I’m aware of a lot. So, the word “awareness” works really well for me in my life. Describe my life in one word, actually, and it’s probably “awareness.”

So, let’s not make this month about just liking a Facebook e-card about cancer or reading a family’s caringbridge entry and then walking away. Let’s all admit that awareness is just a legacy, bullsh*t word and lets all commit to making this month about action. Action saves lives, awareness does not.

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

Her legacy…

Santos Family

“I look at what she has accomplished in the last 5 years since I last saw her and it makes me so proud. It makes me think that we really must have done something right. All these years that we beat ourselves up on where we made a mistake or wrong turn that ultimately ended her life. But, maybe all those decisions were the right ones because they brought us to this place we are now, to a place where her legacy is outliving her actual life. It brings me to a place where somehow her death is making the world a better place for someone else.

This thought is something that helps me sleep at night because I know this is only the beginning. All of those pieces of her may be slipping through my fingers in my own life, but it’s building something bigger than me. She experienced all that pain, so that this wonderful thing could happen. And maybe now I have to experience all the pain to keep allowing it to grow. It’s the least I could do for her and I should feel honored to do it.

Not a day goes by where I don’t miss her. I still can’t honestly say I wish this never happened to us even seeing all the good it has done. But maybe that day is coming where I will understand it… I’m getting there. I just wish she were here to witness it all alongside me.” Isabella’s Mommy

While Isabella didn’t win her fight against neuroblastoma,you can honor her and help families and kids in the fightagainst theirs. For our 10 year anniversary and with a goal of $1,000,000 we are looking for 100 people to become part of ISF as a Sustaining Monthly Donor.

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

And we both knew it was over…

Isabella, 2005-2012

“Moments go by and I forget that it has happened. I think that she is just out with someone. It all happened so quickly but the hours felt like an eternity. Tuesday night I got her up out of bed and put her in a warm bath with me. I knew the water would feel good to her and cleaning her would help her sleep. As she laid on top of me we tried to talk about things but when she would speak, the words didn’t make much sense and she was having trouble getting words out. I think that for the first time it made her nervous. She could hear herself and she knew it wasn’t right. Stuart helped her out of the bath and she was too weak to use the restroom or have her teeth brushed. We were supporting her completely. She curled up in bed and tried to watch “cats and dogs” with daddy but she was so exhausted.

I was still giving her oral meds and pills every couple of hours so we were controlling pain, vomiting and anxiety pretty well. I remember giving her meds at 4 am that she took but when I woke at 6am, she could no longer take the meds. Stuart and I knew that morning that we had turned another corner and I started pushing all meds through her port from then on. When hospice arrived that morning, they confirmed that we had hours. Just the day before we were given a couple of days up to a week, and like that – we lost time.

We began to allow people to stop in for a few minutes each and give her kisses and goodbyes. Each one was harder and harder. I just sat there and held her hand as the hours progressed. Her heartbeat was still going strong but her breathing had changed. The time between breaths was getting longer and longer as the day continued. I was able to curl up with her at moments through the day and we would nap together. It felt normal as I curled around her body and allowed myself to relax. We just laid together all day. Each time I had to get out of bed to get her iv meds together, I was scared. I knew that every moment was crucial. I remember falling asleep from midnight to 1:30 in the morning. As soon as I woke, I started to cry because I was so pissed with myself for missing that 90 minutes. She looked so different in just 90 minutes. Family took shifts with me as I tried to stay awake as best I could. Stuart caught a cat nap while my mom and I laid on each side of her. My brother sat in the chair next to us as we talked about anything to keep us awake. I would talk but watch her stomach rise. My conversation would come to a halt at times because I was waiting for a breath. I kept putting my hand over her heart to feel the pounding of it to keep me sane. By this time, her eyes were no longer closing. It made it hard to sit in front of her because they were no longer her eyes. I knew that she was gone but her body was trying to live. It was ripping my heart out that my daughter’s once beautiful face had become so painful to look at.

I was able to sleep from 6-7:30 in the morning while stuart and my sister kept watch. I knew when I woke and looked at her that it was it was time to close off our bedroom to family and have Stuart and I lay next to her. Her body temperature was dropping and her color was changing. I kept rubbing her hands, thinking that if my hands rubbed them enough, they would turn pink again… But they never did. I wish I could of sat behind her and just held her but I couldn’t. I had to sit facing her. I wanted her to know that I wasn’t afraid. I was going to experience every minute of this moment with her no matter how hard it was.

I think Stuart thought she would go in a couple of hours. But I knew by looking at her that it was time. Her breaths became scary.. Each one made me think it was her last. I could see the end of her line resting on the skin above her heart so I just watched it move so slightly up and down to assure me a part of her was still here. Stuart told me that I’m putting too much pressure on myself by not looking away. But I couldn’t. Her face changed. I don’t know how to describe it but it did. I knew that the next breath would be her last.. And it was. I sat there in silence.. Just holding her hand. I pushed away the end of her port and placed my hand on her chest. There was nothing. 9:50am. So many times in her life my hand was feeling her heartbeat and it wasn’t there. I just said, “Stuart.”. And we both knew it was over. I kissed her sweet face, her sweet hands and tears of pain were falling from our eyes.. Feeling like knives cutting our faces. We locked our door and knew that we owed Isabella the privacy she deserved as we got her together. I took off her port, her patches and her bandaids, freeing her from it all. Stuart carried her to the bathroom and laid her against him in the bathtub as I washed her body. We laid her down and dressed her in her favorite silk pony pjs and carried her back to our bed. We spread out her favorite blanket and put her head on her silky pillow as we wrapped her up nice and warm. I kept trying to close her eyes because I felt like it would scare Grant but they still wouldn’t close. Her color was changing quickly so I had to put some pink on her lips and cheeks just so grant wouldn’t notice her coloring. We brushed her hair and folded her hands on her chest. We let our family come in one by one and see her as we sat back, knowing we had truly done all at we could do.

My mom picked up grant from camp and brought him home. We took him in to see her and he sat on my lap next to her and cried. He had lots of questions like how we knew she was dead, if she was just going to stay in our bed with us now that she wasn’t alive. So many innocent questions. Questions you never want to give the answers to. Sophia came in and crawled right up in bed with her. “Bye Belle” she said as she gave her a kiss and a hug and then off she went. The funeral home came quickly which was best. Of course the A/C unit on the second floor of our house went out over the last 24 hours of Isabella’s life so by this time in the process, our bedroom was 78 degrees and climbing. Someone told me that they were here to get her and I just kept thinking, please don’t be creepy looking. Please don’t have bad teeth or some cheap suit on with a stain on it. Why was I thinking this? Stuart carried her downstairs and I swore I wouldn’t watch as they took her. But there I was, following behind in my pajamas watching every move. They placed her on a gurney and I kissed her head and told her I loved her. I had to turn away as they put her blanket over her face. I saw the bag underneath and I knew they were going to zip it over her. I had to turn away. When I looked back, she was in the back of a minivan driving away and I wanted to scream. I knew the cremation would be in 24 hours and I couldn’t handle knowing that she was going to be somewhere without me next to her in a building with strangers. But what could I do? Or that in 24 hours it will be like her body never existed.

I wish I could tell you what happened the rest of the day but I can’t. And I’m sure you are all wondering why I am sharing such intimate details. It is because I am still blown away that it happened. You know children die from cancer. But to see it is unlike anything you have ever imagined. All the notes of “thinking of you, praying for you..” or my least favorite, “RIP Isabella”.. they all seemed like things I would have said to someone but they feel so weird to hear because the don’t feel equal to the situation If everyone had to witness what Stuart and I witnessed, there would be a cure for cancer. Instead of those comments, it feels better to hear, “I ran around my house screaming and punching walls today..”, or “I thought of Isabella and gave blood today or decided to volunteer”, or “I hit up my wealthy great uncle and he gave a million dollars to neuroblastoma research.”. Those feel more appropriate after what I saw. Because however you picture a child’s life ending can’t compare to what it is really like. I’m haunted by the images of her in my mind. I can’t walk in my bedroom, in my bathroom, I can’t close my eyes without seeing her eyes. I know in time the good memories will replace these but I don’t know when that will start. How can we live in a society that allows this to happen? People are living lives and not looking behind this curtain because if they saw what I saw, they would do everything they could to prevent it from happening. People say God needed another angel. If God can make giraffes and waffles and walmarts, then why doesn’t he just MAKE another angel? Don’t take mine. I know I’m in these stages of grief.. Denial, anger, frustration, sadness. I experience a new stage every hour. We had to bolt out of town for a couple of days because I’m literally tripping over her everywhere I go. Her flip flops, her placemats, her toothbrush, her book bag.. It’s punching me in the face at every turn. I need to clear a daily path when I get home so that I can at least function.” -Isabella’s Mommy, June 28, 2012

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

Where she found the strength, I’ll never know…

Isabella and Daddy

“Unfortunately, Isabella is no longer getting out of bed. As a matter of fact, she is barely moving.. or barely awake. I know that CB could never give you a crisp enough picture of what is exactly going on here and I should do better at that. So many of you have followed her in this journey for so long and I know you are wanting to know how she is doing. Our nurse visit today told us that we are just a couple days away from her passing. Her heartbeat is slowing down but sounding different because her heart is working harder. Her oxygen is slowing down a bit too. Her breathing is slowing down so much in fact that I just stare at her. She will take a breath and then it will be so long until the next one that I find myself holding my breath until she takes one again. She sleeps most of the day and gives me small glimpses until what is in her mind. I lay with her so quiet and still and listen to the things that she says in her sleep. She asks me if I see things or tells someone to wait on Mommy. She will say Grant’s name but then it wakes her and she says that she was just dreaming. She flinches and smiles, makes gestures with her hands and squeezes my hand softly. It’s like she is talking to someone. But the occasional smile let’s me know that it is not conversation that scares her or makes her sad. Each night Stuart and I snuggle in beside her and tell her things just in case she is not with us when we wake up. We have been told by hospice that we are lucky. She is relaxed, comfortable and not in pain. So many children pass in pain or discomfort or even worse.. scared. She seems to be at some peace. Grant misses her already. He comes in bed and wants to crawl in next to her. The other day he just snuggled beside her and scratched her back while they (he) watched a movie. She didn’t moan or cry out for him to leave. She just laid there with him quietly.. as if to give him a moment. Sophia walks around dressed in princess outfits and opens the door occasionally to say, “Bella!” but then is quickly shooed out so Ib isn’t disturbed. Behind the scenes we are making arrangements so that we are as prepared as we can be. We are once again overwhelmed by the things showing up at our door. Fruit, flowers, meals, cards, items for the kids.. amazing stuff really. I’m picturing the mounds of thank you cards that I want to write when this is all done but I’m also scared to write them because it will mean she is no longer with us. It is becoming a beautiful thing that I’m watching honestly. You think you love your kids, but this is like no love I ever knew. I feel so privileged to be hand in hand with her during this last time in her life. She is finally allowing other people to have quiet moments with her as well. It’s as if she is giving them some last gift to say thank you to them as well. Even my Mom who she adores was moaned and groaned at for some time.. but she is curled up in bed with her now receiving her gift from Isabella for all she gave up in her life. I’m so thankful that everyone who is important, gets to be a part of this in the end.

Sunday was Stuart’s birthday. Isabella found the strength inside her to come down and sing to him. Where she found the strength, I’ll never know. She gave him an entry to the NYC marathon this November 4th that will run right down 1st Avenue by Sloan-Kettering and the Ronald McDonald House of NYC. Stuart will be running on behalf of Fred’s Team which raises money for MSKCC’s Neuroblastoma research program. Stuart has lots of motivation for this run and he will amaze us all. She will be there in spirit cheering him on… and even in her passing, she is still trying to make a difference in the kids that will come behind her.” -Isabella’s Mommy, June 26, 2012

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

Taking each day for what it is…

Isabella and Grant

“The majority of my days are spent in the bed with Isabella. I try to lay with her in the morning until around 4 each day. We don’t do much in the bed. Occasional meds, back rubs, small conversation. I’ll get her up and put her in the bath with me to make sure she at least feels clean every day. But with each bath, I look at this girl and can barely see my Isabella in there. Her stomach is sunken, ribs showing every bone. Her shoulder stick out like they want to punch through the skin and her spine shows each vertebrae. I can no longer carry her with my hand on her back because it just upsets me too much. Her pain comes and goes and when it comes, it seems harder to get on top of. We have increased her pain patch and the nurses are coming out tomorrow to show me how to push meds through her line. I think it’s my last step in becoming a full nurse for her. It’s what I want though. I feel like I want zero help from the medical profession going forward. It just is too personal to me at this point so I’m starting to even close them out. I know I am driving them crazy but they deal with me the best they can. I know they mean well.. but it’s just hard. We have days where the pain is so intense that she starts vomiting over and over. We wonder if things will start to turn for the worse, then the next day is quiet and she sleeps all day. One night this week she started to become disoriented and had trouble speaking.. but then cuddled up and slept through the night. It’s hard because we come to peace with things and what is going to happen, and then she walks downstairs and eats a bowl of ravioli. But just as quickly as she appears, she disappears yet again. Her counts are sky high so we aren’t needing transfusions.. which is odd because we were told to expect transfusions because the neuroblastoma and radiation will start to knock them down considerably.. But that is not happening. We think she will only make it a couple of days and then a week goes by. A horrible night followed by a day up and chatting with me about how my birthday gifts for daddy are “not fun” and she wants to get him something fun so we search the Internet together. Really??? I honestly don’t know what in the hell we are doing. Stuart is trying to stay busy with work or the house, Grant is in camp, Mom is entertaining Phia, Stuart’s Dad is helping him with whatever is bothering Stuart and Katherine is organizing my pantry. It’s honestly a very weird house right now. But, we are just taking each day for what it is.. another day with Isabella.

While we are all trying to come to peace with things, Grant is beginning to struggle. He is having moments of tears that come from just seeing a picture of them together. Nightmares, night sweats and the constant need to be right next to me, let me know that he is grieving. He misses her. He comes and gives her hugs when he leaves and constantly says, “tell Isabella I love her”. Even today he came in and sat next to the tub while Isabella and I took a bath. Just talking about whatever came in his head.. but it just felt normal to him for a minute. They talk as if nothing is going on.. he tells her that her hair is coming in good, or they talk about how library day will work next year at Marvin, what happens when people have surgery, his new Spider-man book.. whatever. He just wants to be there. I’m amazed he doesn’t mention the look of the body he sees in the water.. he notices it I’m sure. I know the key will be keeping him active when this process comes to an end. I’m looking forward to giving him the attention he deserves and getting to connect with him again. Right now the kids get me in doses of when I’m downstairs for a bit. They light up when they see me like it’s been weeks since I was there. I sit on the couch with Grant and Sophia and they both take my arms and wrap them around their bodies. It feels wonderful.” – Isabella’s Mommy, June 21, 2012

I get it. It’s not a fun thing to do. You may drive all the way to the center and get turned away. It’s cold in there. It may take them a couple of tries to find a good vein. You are worried you might pass out. It might be uncomfortable for a while. It’s boring. It may take a little longer than you want it to. I know all these things that go through your head, because they go through mine too.

You would think after our family’s experience, I would be giving blood every chance I could. But, like you all – I get busy or some of these excuses start ringing in my head. I have to be honest though, I do try as much as I can to give blood if I have the chance at a blood drive. Giving blood doesn’t take long at all and other than having to control my alcohol or exercise that day – it doesn’t impact my life too much. It’s like voting for me. I feel good doing it and feel proud walking around with my elbow wrapped up in horrible blue tape for a couple of hours. It’s like a battle scar that somehow says, “I care”.

Platelets. For some reason this process is a whole new ball game. I don’t give them as much as I should. I’m just lazy about it really. I’m very particular about my platelet giving. It is a must to have someone with me to entertain me for 90 minutes. I find that I try to bring Maitland with me so that we can kill two birds with one stone in the chair and knock out as much work as we can. We sometimes get our best work done in those chairs. I also like that she keeps my mind focused. I can’t focus on Isabella too much in those chairs or the experience may become to painful.

I have had some very memorable platelet donations. As you know, I find it easy to torture myself without even knowing it. The first anniversary of her death, I decided to schedule a platelet donation during the hours she died of June 28th. I figured that if I was going to do this in her honor, let’s really do it. The center was full that day as we were really pushing for 100 platelet donors that week, which is harder than landing on the moon apparently. I sat in my chair and watched seas of purple come in and out. Everyone knew that I was struggling because I sat there trying to have conversation, but knowing that tears that were falling slowly from my eyes as I talked.

I could see the hour of her death approaching and I just wanted to die. My brother came in during that time and sat with me. I think he gave blood instead of platelets that morning but all I really remember was him being with me. He was there with me on the day we found out she had cancer, up until the day she died in our house. He is a quiet brother at times but his presence is heavy. We don’t often talk during these times about what is really going on in our head – it’s like an unspoken thing. He knew how hard it was for me as I sat there and sobbed. He just sat there – understanding how the things we hate to do, still need to be done. This is not where I wanted to be on this morning and he knew it. He knew I wanted to be in my bed, sobbing and not sitting here in this gray chair. But once again, I was doing something, not for myself, but for her. It was the longest donation of my life – but the most meaningful.

We left that morning together and drove to pick out an engagement ring for his girlfriend, Laura. He let me be a part of a huge day in his life, maybe because I let him be a part of mine. We went to lunch and had a drink and laughed. By then my tears were dried up and I had focused on the excitement of his day. He was starting a new chapter and I got to be there for it. It was a good day in the end.

Each year as this date approaches, I feel myself wanting to retreat. I have gotten a little smarter and try to no longer go during that hour of her passing. It’s just not a smart thing for me to do anymore. But I still go. I go because I know how important blood and platelets were to her survival. I go because I remember her bruising from the slightest touch and how platelets repaired her body so easily. I go because I remember her not being able to walk into the hospital, only to find out that she was in such desperate need of a blood transfusion that I would have to carry her tired body everywhere. She would run out of the clinic after her transfusion, as if the events of the earlier day never occurred.

I go because every time I’m there and I check in, the staff knows me and knows her. Someone there always says a kind word to me about her legacy and I know there is no where else I should be.

I go because it’s the right thing to do. I go for her.

Please help us honor Isabella through your platelet donation with The Community Blood Center of the Carolinas during the entire week of June 21-28…AND at ANY of their locations. Our goal is a 100 donations.